by Natalie Gutierrez"I’m here to give your child his last rites. I hear he’s not going to make it," the deacon said solemnly to Dora and Arturo Rodriguez when he arrived at the hospital. With tear-filled eyes, Dora replied sternly, "No. He’s not going to die. I just need you to pray with us." She clasped his hand tightly, closed her eyes and the three prayed together fervently. Just minutes earlier surgeons had rushed her month-old baby boy, Bryan, into emergency surgery to repair a perforated intestine. His tiny body was limp and swollen. Doctors told her there wasn’t much they could do. But then – a miracle. After four grueling hours, Dora and Arturo learned Bryan was alive. His survival was one of many miracles since he and his twin brother, Sean, were born.

The brothers were born 12 weeks premature and weighed only 2 pounds,
11 ounces each. Like many premature babies, their organs were not fully developed at birth. At a week old, Sean was diagnosed with patent ductus arteriosus (a condition in a premature infant in which a blood vessel in the heart that should close remains open, spilling excess blood into the lungs.) He later underwent surgery to have it repaired. Three months later, Sean was diagnosed with hydrocephalus (a condition that causes fluid to collect in the brain). These and other ailments along the way have made caring for the children very complex.

"I am very blessed that my boys are doing so well," Dora Rodriguez said. The boys, now 4, act like any normal boys their age. "They’re very active," she said. "It has been a very bumpy and sometimes overwhelming ride. But you just have to keep the faith."

Of all the miracles in their lives, Rodriguez said one of the most important ones was learning about the Premature Infant Development (PREMIEre) Program at The University of Texas Health Science Center at San Antonio. "I felt so out of control at first," Rodriguez said. "But the staff of the PREMIEre Program was there to help me every step of the way."

"After serving for three years on the PREMIEre Program Advisory Board, I know there is minimal public funding for the developmental follow-up of premature infants. It is of great importance for the community to invest in these young children, who are our future."

Established in 1981, the mission of the PREMIEre Program is to ensure that every infant enrolled is carefully assessed for physical, motor, mental, speech and behavioral development. Families are followed and provided resources until the child is 3. The program is supported by the department of pediatrics and the division of neonatology. Recently, the program has added a focus on Hispanic families to study cultural influences on early infant development. Sixty-five percent of the families served are Hispanic.

Rajam Ramamurthy, M.D., professor of pediatrics and medical director of the PREMIEre Program, said advances in technology and knowledge about the pathophysiology of the premature infant have ensured a survival rate of 90 percent of the infants cared for by Health Science Center faculty.

"These advances have outpaced the understanding of factors influencing optimum growth, cognitive development and behavioral outcome," Dr. Ramamurthy said. "There is a significant void in the scientific literature in the understanding of these factors in the Hispanic population. It is imperative that ongoing development-oriented care be as much a focus as the care these infants receive in the intensive care nursery, and also to ensure that the environment they go home to is conducive for the best outcome."

PREMIEre Program staff members provide families with a development-oriented care curriculum that includes instructions on caring for the infant upon its discharge from the hospital.

"We also try to visit the family’s home to inventory the environment before and after the child goes home," said Wanda Daniels, R.N., PREMIEre Program case manager. "However, home visits are a challenge with limited manpower." Kathleen Matula, Ph.D., PREMIEre Program developmental psychologist, said comprehensive developmental assessment, using standardized testing methods, is a unique service of the program.

"The doctors and nurses in the program are angels," Rodriguez said. "They called me often and sent me letters with advice and encouragement. I can still count on them to help."

According to Robert Castro, M.D., associate professor of pediatrics and director of the fellowship program in neonatology at the UTHSC, a higher percentage of babies are being born premature and are surviving. "Today, with in vitro fertilization, we’re seeing more multiple births. And with twins, triplets and quads, you tend to have mothers with stretched uteruses that just can’t hold the babies to full term."

"The PREMIEre Program accepts all families regardless of their financial status," said Carolyn McLerran, PREMIEre Program coordinator. During any given year, 300 families are actively followed and 100 to 150 new families are enrolled. If a family needs financial assistance, PREMIEre Program staff members help find it.

"I know my children were born to do great things," Rodriguez said. "The PREMIEre Program staff members have helped them thrive. And for that they’ll always hold a special place in my heart."